what is pill in pocket about & would it work for me?

I have been wondering if I would be eligible for PIP flecainide since I hate taking it all the time. I don't really understand it & I am sure I would have to know what I am doing to employ this method. I glanced at the resources on afibbers here to see if I could find out anything about it, but I got sidetracked with several other articles.

I was started on flecainide 4/17/20, after an episode of atrial flutter. Perhaps coincidentally, about the same time I started getting constant mouth ulcers to this day. Mouth ulcers are a problem for me intermittently because I have NCGS (non-celiac gluten sensitivity) most likely. Since my afib & flutter problems, my thyroid meds have been toyed with by my endocrinologist since he began to think there might be such a connection between my thyroid meds & my heart arrhythmias. However, a dr is not supposed to treat thyroid by TSH values, which he is now doing. Consequently, my more important free thyroid numbers have gone way down in order to get the TSH higher. Even my cardiologist agrees with me on this one in that I can now start getting my frees higher since that can certainly contribute to a host of problems for me. I have Hashimoto's & total surgical removal yrs ago of my thyroid, so it is hard to keep it all in balance when I have other problems added in.

Then I also had a huge one-time episode of vertigo February 1st, which damaged a nerve causing me lifelong vestibular problems of feeling boing/boing. Ironically though I still have pretty good balance & can exercise just like before, though not as good on yoga balance poses. So, the flec contributes to that "dizzy" feeling from all this too.

I saw my cardiologist a week ago & he did not want me to experiment with going off flec even for a week just so I could see if it would help my ulcers. (I did see mouth ulcers listed as a rare side effect fr flec & I am definitely prone to them anyway, so it is worth a try to see if getting off flec would help them stop now.) I abided by my cardiologist's wishes for a few days until I could not stand it anymore & had to try going off flec. But, as you can imagine, going off of it for a few days is not going to get rid of the ulcers immediately. I go through adjustment changes in my system right off every time I start or stop an antiarrhythmic. I usually start to break out with a bump or two on my chin - don't tell me they don't affect one's whole system. It seems to mess with my hormones some. So, I realize I will have to be off flec long enough to get through the adjustment of this change to my body, then a little longer to see if the ulcers stop.

If they do, then I don't want to start it back. If they don't help my ulcer situation, I will start it back reluctantly. I was very scared the first few days of just stopping flec cold turkey, but I am becoming more at ease with it bec after all, I have not been on antiarrhythmics for long periods a few times since my ablation & have done fine - I guess the longest time was 4 months before I had an arrhythmia. I just need some time to experiment with trying to heal my mouth ulcers & stop them from coming back to back.

Would a pill in pocket approach serve me or is it a more dangerous thing to try by one who is not very experienced with all this?

Mainly right now, I want to get rid of these burning ulcers - they are the things people get who are on chemotherapy or ppl with HIV/AIDS too, in addition to food-sensitive ppl like me who have thyroid problems. It may sound like nothing but to have 2-3 of these in your mouth constantly for over a month burning night & day is no fun.

Thanks.

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Madeline
I have been wondering if I would be eligible for PIP flecainide since I hate taking it all the time. I don't really understand it & I am sure I would have to know what I am doing to employ this method.

Would a pill in pocket approach serve me or is it a more dangerous thing to try by one who is not very experienced with all this?

Pill in the pocket flec is pretty simple. If you get afib, you take flec, often preceded by a beta blocker (like 25 mg of metoprolol). The max flec dose is 200 mg if you weigh 154 #'s (70 kg) or less, 300 mg if you weigh more. Some docs will have you take part of your dose (say 50 or 100 mg) first and wait for an hour and see if you convert, then take more if you haven't (up to the max, of course). I take it absolutely as soon as I realize I'm in afib and I chew the pills to get it in the system as fast as possible (may not be optimal for your mouth sores).

Knowing that you are in afib is one thing you should be good at. You don't want to take flec if not. I've got 15 2/3 years experience and I know if I'm in afib. I'm not symptomatic, I just know. I can verify by taking my radial pulse. I can also verify with a Kardia or a device or app that shows pulse wave.

Your cardio or EP should be on board, too.

Flecainide is a black label box drug- it isn’t one to toy with if you decide to take the 300mg dose and if you weigh less than 154 pounds. Foolishly I listened to this forum regarding PIP and ended up in the cardiac icu for 3 days. My charge nurse told me I was lucky to be alive. Search GeorgeN post on flecainide weight/dosing —the safe dose under 154 pounds is 200mg during a 24 hour period. If you weigh more than 154 pounds then that differs from me. I weighed 121 pounds when I overdosed. Be safe. I wish I listened to my EP. He got so frustrated at me and said in his entire career he has never said to a patient “i told you do”...and I was the first.

I weigh 107 pounds, take carvedilol (Coreg) 6.25 mg b.i.d. & when I take the flec, it is 50 mg b.i.d.

My index ablation was 8/2/19, and got rid of the afib. I had one atrial flutter 3 1/2 mo after my ablation bec I had stopped taking the sotalol early.

I had one more atrial flutter this April and was on no antiarrhythmic meds at the time, just my low-dose carvedilol & of course my Xarelto, etc.

I need another ablation for what is deemed to be left atypical atrial flutter, but am waiting for better COVID situation before going to Texas.

So does this work for atrial flutter too?

So what would I do?

I am 6'4" 220ish and long ago before my ablation I think I was taking 200mg (100mg x 2) a day for a while and then 300mg a day (150mg x 2). When it started getting progressively worse I would take an extra 100mg and it would always convert. Didn't last long and I would be back in afib shortly leading to ablations. But for 9 months or so Flec held me in rhythm perfectly and then slowly lost effectiveness. But a bit extra was also effective at converting me. Finally when I was going in and out almost all the time Tikosyn was tried, that just made my heart do all sorts of weird things. Off to Natale shortly thereafter before letting my EP experiment on me a 4th time.

Agreed, with this drug I would not take advice from anyone but an EP on this one. Lots of people here know a lot and mean well but all our medical histories and puzzles vary. No one size fits all.

Unfortunately, flutter (AFL) is usually less responsive to PIP than AF. Antiarrhythmics like flecainide often work well at preventing AFL but rarely work well at stopping it once it's going. Same with rate control drugs. They're often ineffective at slowing your heart rate during AFL. Cardioversion is often the only way to stop it.

I don't think PIP is a good way for you to go. It's maybe not even all that safe.

Madeline- at 107 pounds you want to switch from 100mg a day (100 x2) to 300mg!!? Please listen to both Carey and Fibrillator’s advise and talk to a competent EP. When I mean competent- not someone who wants to humor you and will ignore his dosing knowledge to a non medical trained patient to experiment on a high risk Rx. In the meantime until you do speak to your EP, visit drugs.com and read up on the dosing and risks for Flecainide.

Second ablation in January and on Flec for 3 months post ablation. After I went off, during April and May, I had 6 breakthroughs. Took the pill in a pocket route, which stopped all but one episode in a couple of hours. I took 200 mg as fast as I could after the onset. The one episode that lasted a day and a half, I couldn't get to the Flec for a few hours. During that episode, I took another 100 mg 12 hours after the first 200 mg.

Now I have a stash in my cars. I weigh 175 and am 75 years old. I have felt no ill effects from the Flec. I am on no other meds and have gone the last 6 weeks with no afib, so I hope I am in the clear from the blanking period. I have also upped my Mg supplement to 400 mg / day. I also take potassium and taurine.

My pill in a pocket was approved by my two EPs. Ablation in Dallas, living in Raleigh.



Edited 1 time(s). Last edit at 07/07/2020 09:16AM by Ken.

A hot car may not be the best venue to store meds. For full potency they should be stored between approximately 68-78 degrees. Some sites say 59-77 degrees. Room temperature.
[www.npr.org]

I purchased the following that I keep in my purse when outside during the hot 100-115+ degree summer. It stays wet so you may want to keep it away from items you don’t want wet. I bought the waterproof case for it:

[www.amazon.com]
They come in a variety of sizes.

This is the correct one. The other is for insulin. This one I used when traveling and sightseeing in Spain during August. It holds about 4 medicine vials. It stayed cool for a while.

[www.amazon.com]

Good point with the heat in the car. I guess I will have to be more attentive to not forget to put the pills in my pocket. But my pocket is likely to be pretty warm. I don't carry a purse.

Ken- I store my meds in this bag:
[www.amazon.com]

It has a digital temperature display. It is made well. Sturdy. I lined further with silver insulated sheets that I cut out of grocery insulated bags. It comes with small reusable ice bags. You just have to be careful initially the removable ice bag doesn’t cool your meds too much and drop the temperature. I purchased the 2 ounce, 4 ounce and 8 ounce bags and use depending on exterior temperature, and have spares in my freezer to change when thaw. Or in the house when I don’t want to run AC. Especially when visiting one of my kids who had no AC and lived in a desert.

Ken- the insulpak bag holds a lot of meds including supplements as you can see in the following photo. I added the silver additional insulation. It has two sides with two zippers, one could be for ice. With the shoulder strap it’s portable.
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Thanks, Carey. That is just what I wanted to know - if it even worked for flutter since everyone keeps telling me their afib experiences. I will get back on flecainide as soon as I can. I still have 2 raging ulcers & once they develop, they can last 14-16 days, so I want to wait & see if I stop getting any once these heal or even now while they are here I can still get more. If this continuous bout of ulcers stops while I am staying off flec for a while, it would seem the flecainide had a role in causing them to happen so much. Then I would want to stay off flec.

After that is found out, not sure what to do. Might need to go back to sotalol. If I go back to sotalol, hopefully he will let me start it without hospital as I did that before once already the first time I had flutter. Just recently though, he did tell me if I were to start Multaq, I would stop flec & wait 24 hr before starting Multaq. So, if I decide to switch back to sotalol after my trial off flec, can I just do it on my own (I still have pills) or I guess I would need to see my local dr again not only to inform him, but to see what dose he would have me on comparable to the flec 50 mg bid.

I have already been round & round with him about flec & the ulcers & I intended to stay on it after my recent visit, but of course I was hoping the ulcers would also stop eventually. They did not & I am desperate, so I made my own decision to stop temporarily without telling him. I do go to the office when I ask these questions a lot though so he can get paid for his time & he usually gets in a charge for an EKG too.

You know I had problems on sotalol too, but not the ulcers. It may make my new-found dizziness (since February) even worse than flec does. Oh, and don't bother telling me to try Multaq because Medicare & my drug plan don't cover it without a high deductible & higher copays monthly too.

Wish Natale would come to Tennessee to do some ablations, maybe Vanderbilt. That would be easy for me to do. Maybe Shannon can talk him into it - after all Vandy is a nationally recognized hospital.

Thanks & Thanks to all others who posted their experiences, advice, etc.

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Madeline
I still have 2 raging ulcers & once they develop, they can last 14-16 days, so I want to wait & see if I stop getting any once these heal or even now while they are here I can still get more.

Wonder if you've ever tried l lysine for your mouth ulcers. Sometimes it can be quite effective.

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GeorgeN
I still have 2 raging ulcers & once they develop, they can last 14-16 days, so I want to wait & see if I stop getting any once these heal or even now while they are here I can still get more.

Wonder if you've ever tried l lysine for your mouth ulcers. Sometimes it can be quite effective.

Actually, lysine is for fever blisters (herpetic sores on outside of lips) & mouth ulcers (what I get) are aphthous stomatitis - a different beast on the inside of the mouth - immune system type causes I guess (i have autoimmune Hashi's). Nevertheless, I did try it to satisfy everyone's curiosity & lysine does nothing for me.

I did by accident find that when I started using an Ayurvedic toothpaste, my ulcers seemed to go away if I brushed more often when an ulcer tried to start up. It was quite by accident that this happened to give me this result with my ulcers - it was my only change at one point when I was getting ulcers so I knew it was the toothpaste.I had not even gotten the toothpaste for that reason. It has Neem & peelu in it & if you look up Neem, it most likely is what helped. It has worked for the most part for years to stave off my ulcers from coming or from developing fully. I called it my miracle toothpaste. But now, it is not working since June, also exactly when I started flecainide. I do have to watch my gluten intake of course all the time too. Gluten sensitivity is the cause of my ulcers & I cannot be absolutely 100% gluten free in every way every day, though I am pretty darn good about it. Just about never get to have a sandwich at lunch or toast at breakfast - really abstain from bread as it is a major culprit for me.

I’m gluten free and found also corn or oats cause me issues-they are ingredients of some gluten free products. Maybe try abstaining from corn and oats as an experiment. Trader Joe’s has a perfect gluten free bagel that is extremely good. I understand some/most gluten free products taste nasty Thus you can’t be 100% gluten free—but Trader Joe’s everything on it bagels are to die for. You may like it and make eating gluten free easier.

Thanks Susan. An everything bagel NY style sounds scrumptious. I have a distant memory of one. I will have to try it. Also, a lot of gluten free processed foods are no better for us with their other ingredients. But who eats only pure fresh food prepared & cooked by oneself 100% of the time. Sometimes a cake, a cracker, a chip, etc. is most desirable. Oh, what brand - is it Trader Joe brand everything bagel?

Trader Joe’s brand. I freezes them. I have not marketed since March 16. TJ doesn’t deliver. Lucky I have 3 freezers. If being gluten free helps your Arrhythmia then great!
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Your doctor obviously has never had an apthous ulcer! They are miserable! Can your dentist cauterize them? or allow you to do it at home?

I read in the Magesium Miracle book that Flec has Fluoride in the formula and that fluoride binds with Magnesium. An adequate level of Magnesium in the cell is crucial for proper functioning, including cardiac cells. If the flec depletes your body of Mg, I wonder if it is also depleting some other valuable nutrient that your body needs to stave off the ulcers?

Have you asked your dentist what is causing all of the ulcers and see if he/she can brainstorm with you on how to prevent them?

I just feel so awful about all of your apthous ulcers! Stress causes them. I used to get them around Christmas time when I was in college, finals, Christmas stress, family issues..... I used to know someone who got them everytime she ate pineapple or grapefruit. There must be something running your system down. Surely there's a good Functional Medicine Doctor in your area who can get to the root cause, or maybe an Integrative Medicine Doctor.

If you absolutely can't get to Austin, you could always go to Dr. Hrantizky in Raleigh, NC. Hopefully you won't need to!

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LaniB
I just feel so awful about all of your apthous ulcers! Stress causes them. I used to get them around Christmas time when I was in college, finals, Christmas stress, family issues..... I used to know someone who got them everytime she ate pineapple or grapefruit. There must be something running your system down. Surely there's a good Functional Medicine Doctor in your area who can get to the root cause, or maybe an Integrative Medicine Doctor.

If you absolutely can't get to Austin, you could always go to Dr. Hrantizky in Raleigh, NC. Hopefully you won't need to!

Hi LaniB,

Thank you for your concern. I guess the main thing “running me down” would just be the fact that I have no thyroid anymore and since getting the arrhythmias a few years ago I was taken off my completely natural desiccated thyroid medicine and transferred to synthetic. In the past couple of months I have gone ahead and added a tiny bit of my natural desiccated thyroid back in to a reduced dose of synthetic and I have gotten more energy back. I do have a problem with gluten but I can’t be 100% gluten-free. I was able to manage this better though when I was on my other thyroid medicine and also before I started flecainide. I read with interest what you said about flecainide and fluoride. I do avoid fluoride and have an Ayurevedic toothpaste without fluoride which also is my miracle gluten cure that usually stops an ulcer from progressing until I started flecainide. I am on Day 11 of the current two ulcers in my mouth and for the first time since being off Flecainide for 12 days, there are no others starting up yet. 🤞 I knew it would take some time being off of the flecainide greater than a couple of days more like a couple of weeks in order for me to go through the body adjustments, get rid of the current ulcers as they go through their course and then see whether I would get any more.

I did used to cauterize them myself when I had access to those long Q-tip like sticks with silver nitrate yrs ago. But I am fine just riding them out these days especially with so many. It’s bad but it’s not as bad as it sounds. I’m hoping to see an end to this round soon, so I can say things like that now :-)

Functional medicine doctors are not covered by Medicare and supplemental - isn’t that correct? It’s hard to find doctors like that in this area anyway unfortunately. I don’t think they even accept licensing of naturopaths here.

You will be surprised to hear that my cardiologist knew about apthous ulcers as he said he had had them. But he did say it had been a while. you know how the memory fades when the pain is not there anymore. Lately I have been photographing my ulcers and putting them in an album on my iPad so that when I next see him and he gets mad at me for getting off the flecainide just because of the ulcers, I will show him my pictures. He did ask to see my ulcers last time and the two in my mouth were at about the 16 day level and not showing as well. So now I have a good body of proof!

I still have to decide what course to take next as far as preventive treatment for my atrial flutter until I can get my ablation again- sigh 😔

YOU GO Girl! take those pictures Usually you do have to pay cash for a functional med or integrative med doctor except for some tests they do will be covered. It sounds like you really know your body well, and I'm glad ulcers don't bother you as much as they used to.

How's your RBC or Exatest Magnesium level? Dr. Levy's new book called: Magnesium Reversing Disease, makes it look like a cure all

I hope you get relief since you stopped Flecainide!

[www.ncbi.nlm.nih.gov]

Perhaps salty foods or acidic foods could be increasing your symptoms. It’s worth the experiment for a few weeks. I had to stop eating lox and other salty foods because I am sensitive. Not easy.

Hello Madeline... I'm so sorry to read about all that's going on for you. An observation about your acidic production affecting your oral tissue. Before I started the Afib journey, probably - 30 years ago, I was experiencing some GERD-like symptoms and I was in the care of an MD who was a practitioner of holistic medicine. It was a 'rare' specialty in our community back then. He connected poor stomach acid production to reflux corrected by specific digestive enzymes and betaine HCl and introduced me to the importance of creating ' tissue alkalinity.'

This was before the convenience of online research so there were books to read ... One was
Alkalize or Die by Theodore A. Baroody, DC, ND, Ph.D., Dipl. Acu. -- details about which you can now read online.

Dr. Baroody had a chart at the time that listed foods that, when metabolized, either produced alkaline or acidic ash...which directly affected tissue pH. Emphasis on 'tissue.' The formula for eating to eliminate the excessive acidity was to eat 80% alkaline ash-forming foods and 20% for the acid-forming. (Alkaline or acid-forming describes ash residue after metabolism. ie, Citrus tastes acidic but leaves an alkaline ash - from the chart).
There was a pH paper test strip that was used to check progress.

For me, it worked quickly and it may be worth your checking into. Since I was in the dental profession, I was very concerned about the affect of the excess oral acidic environment on my tooth enamel and I was pleased to have such quick success once I began that program and no enamel damage..

There are other factors besides foods that help create excess acidic tissue response... including stress.. and who with Afib doesn't feel stressed ?

In addition to Dr.Baroody's info, I have two other references...
Acid & Alkaline by Herman Aihara and

The pH Miracle by Robert O. Young, PhD and Shelley Redford Young.
Subtitle: Balance Your Diet, Reclaim Your Health.

Best to you,
Jackie